Category Archives: Poem

Rules for crrpls: do not ever ever ever ever ever imply that DISability rights is part of the larger struggle for universal human rights, against racism, sexism, gender justice and class power.

Rules for crrpls: Don’t impose yourself on real social justice movements, attempt to infuse DISability rights into discussions of marginalization, or insist, provide suggestions or even resources that would enhance DISability access in the larger human rights struggle.

Rules for crrpls: Keep your political activism limited to organizations that focus on DISability rights and issues of access that don’t interfere with real social justice work, even if and when those organizations exclude you either because they are run by nonDISfolx, white folx, people with social and economic capital or a professionalized staff not interested in grassroots organizing.

rules for crrpls: When people try to help you, always be grateful. Never contradict them or try to explain what you really need. This will hurt their feelings (enrage them). They’re really doing their best (trying to make themselves feel good at your expense), and it’s not like you deserve to actually have a say in your agency, body autonomy or full inclusion.

rules for crrpls: Do not get offended when people make fun of your health condition or physical or emotional characteristics. Certainly don’t interrupt their fun by pointing out the arrogance, bigotry and entitlement inherent in making fun of people’s afflictions and certainly DON’T turn the tables by making fun of them, when they give you that tired excuse “we’re just kidding, lighten up.” When they say, “anything goes” that doesn’t REALLY mean that you can make THEIR entitled asses the butt of your jokes.

Rules for crrpls: Don’t ever assert that Disability rights has any place in the larger struggle for social justice and human rights. these people are working hard enough for social justice to have to find time and resources to include your sorry ass.

Rules for crrpls: Appear grateful and upbeat at all times, and if you can, provide material for the inspiration of people without DISabilities.– You know: paint with your feet, walk on your hands, sing out of your ass– stuff like that. They love that shit.

Rules for crrpls: Never appear more capable than someone without a DISability. This embarrasses them and interferes with their entitled sense of superiority. There’s nothing worse than appearing less capable than someone already labeled incapacitated.

Rules for crrpls: Do not discuss your DISability in public. Discussion of DISability is the purview of those who do not have DISabilities, so they can appear magnanimous and generous.

rules for crrpls: Do not say “excuse me” if someone is blocking your way and is deep in conversation. Wait patiently until they are finished. Also, do not attempt to go around them, because they might bump into you and this would startle them.

Rules for crrpls: Don’t ask if an event that is open to the public or that you’ve been invited to, is ACTUALLY accessible. this is rude, as it puts the host on the spot and risks causing them embarrassment.

Rules for crrpls: Don’t show up to an event that isn’t accessible. This too may lead to the embarrassment of the host. You should magically know with your other hyper sensitive enhanced sensory abilities, if an event is accessible or not.

On Wednesday October 24, 2007, Andy Griggs, my partner, issued the following statement:

Barbara Franklin, union activist and one of last year’s recipients of the UTLA Woman of the Year Award, passed away peacefully Tuesday afternoon, with her daughter, Amelia, and a few friends at her side. Many of you may know that Barbara had been waging a valiant fight against cancer over the past 2 1/2 years….
Barbara’s 18 years in the classroom, and a few years in a teacher release working with the Career Ladder Program at Beaudry, proved her dedication to education work, and the children whose lives she touched. Her work as a chapter chair, CTA State Council Rep, UTLA House member, NEA RA delegate, WHO award recipient, Women’s Committee chair, and member of the Elections Committee, showed her dedication to justice and concern for her fellow teachers and colleagues.
She will be missed.
—-Andy Griggs

Barbara Franklin: Sister Courage
1950-2007

By Emma Rosenthal

On Tuesday September 23 2007, educator and human rights activist Barbara Franklin, at the age of 57, passed away after a long battle with cancer. She died at home in the arms of her nineteen year old daughter, Amelia and the company of a few close friends.

Ours was a short friendship, slow to start. Barbara was the former partner of my life partner, Andy Griggs, with whom she had maintained a strong and significant friendship. As a feminist, like Barbara, I had long ago discarded the frivolous, dangerous enmity that keeps women divided. But in the past I had been hurt by women who still held onto the patriarchal paradigm of female rivalry. So at first, while never opposing Andy’s friendship with her, I kept my distance. Even without hesitancy, these relationships require time, which we didn’t have. They cannot develop with the intensity of other familiars. Care must be taken to find what subjects can be broached, where feelings are tender, where boundaries are drawn. So many forces and social influences push against these connections. There had been much pressure on Barbara not to be close to me. Our bond was the product of her courage. I was much meeker than she. It was her phone calls, her invitations at the beginning. She welcomed me into Andy’s life and into hers. Slowly I grew to trust her. When her illness emerged, Barbara asked Andy to play a significant role in assisting with her care. He checked with me before taking on such a commitment. “Let Barbara know that she’s family.” I told him. How much more difficult her final years would have been if either of us had succumbed to traditional and petty rivalries.

Barbara had several close friends and a large circle of co-workers, fellow church members and union activists who loved her very much, were very concerned with her condition and who assisted heroically her last few years. But I don’t attempt a conventional eulogy of civic life and political connection. While we are both rather public women linked by a very public man, Barbara and I encompassed the realm of experience considered to be private and individual. “The personal is political” “Be the change you want to see in the world.” Our friendship, mostly over the phone and at her bedside, challenged old paradigms of human relationship and interaction. Fueled by her courage and our collective vision, we created space for beauty and transformation.

Barbara was a Christian and a feminist who knew deeply the significance of sisterhood and what it means to truly love, in all of its complexities and demands. These were guiding forces in her life, the map of who she was, what she valued and what fueled her courage.

After she was diagnosed with cancer, she struggled with the limitations it imposed upon her, the demands it made, the challenges to her understanding of self. We live in a society of great divisions especially around illness and disability. The sick are hidden; barriers to inclusion both physical and social are built high and wide. So, few know the language of illness: what to say, when simply to be present, to bear witness. Platitude and pity can be deep poisons. We entered a strange sorority together, with its own set of secrets and pledges.

We talked about our trees, the ones outside each of our bedroom windows. To people who are bedridden, trees are a reminder of vitality. From our beds they keep us company. Mine was a pomegranate; hers, a jacaranda. Time is marked in the budding and fall of each leaf, the emergence of flowers, fruit and seeds, the animals that visit, the light that passes, diffused through translucent leaves.

I witnessed her suffer the gulag that is the American health care system, (despite the “luxury” and “privilege” of insurance.) It was very painful to watch her struggle within this system while fighting for her life, so aware that every stressor fed the cancer. At one facility, transported at four in the afternoon but made to wait, she was denied food. Finally, at 8 pm, when she asked for dinner they had accused her of arriving after the meal had been served. (But for Andy bringing her a meal, she would not have eaten that night.) In another facility she witnessed horrible screams, neglect and abuse. In such a place, water and ice were precious commodities and had to be requested with care, so as not to offend those upon whom she depended. Because of these indignities, and the lack of understanding, there is much terror with illness: great isolation in a society that feels that such matters are too expensive, a personal responsibility or (blame the victim) the result of negative thinking, hypochondria or personal choice.

Her employer, the Los Angeles Unified School District, was no better; withholding her salary and donated sick leave on technicalities that took weeks to sort out, applying stressors to a situation in which they were clearly contraindicated. LAUSD has a horrid track record when it comes to the human rights of its employees with disabilities and illness, often forcing dedicated educators into retirement rather than providing support and accommodations. I was relieved when she opted to retire; an inevitable decision under the circumstances, though I believe for her it was, as it is for many, a harbinger of defeat.

For someone so ill, the smallest tasks take courage: making a phone call, going out to lunch, telling someone “now isn’t a good time.” Lying in bed is tedious, solitary work. To have to measure life in such small accomplishments; such glaring simplicities, can be daunting. I never saw her fall into bitterness or resentment for what was being taken from her. Though we did visit despair together and we were both overwhelmed with the reactions our respective illnesses evoked: many of the same people who have resented my disability, pitied her. Two sides of the same coin: the expectations of behavior, the obligation of the one afflicted to make the rest of society comfortable, the insistence of others that they know what is best –without consideration or consultation– the loneliness that comes when one is reduced to one’s experience without the opportunity to define it for oneself. Always compassionate; on her deathbed, racked with pain and gasping for breath, she said she thought it had been worse for me. Under the circumstances, her empathy was exceedingly generous. But such comparisons are useless. Hierarchies of suffering only serve to divide. It is what we share that binds us.

A few weeks before she died she told me “I’m alive today, that’s what matters.” And while I do believe that in her final hours she came to make peace with death’s impending inevitability, if she could have stayed with us, she would have, regardless of the terms. On one visit, only days before Barbara died, Melissa, one of her closest friends, offered to bring food from a local deli. At every suggestion: macaroni and cheese, Asian chicken salad, mixed sliced fruit, gelato, green bean soup, Barbara became more animated with the anticipation of simple sensory pleasure.

She didn’t want to leave us. She was waiting for her miracle, and like so many, blamed herself when it did not materialize, that perhaps she had not being positive enough. There is a huge burden placed on people who are ill, to will themselves to wellness. And while this may be possible for some, it is an unfair, cruel expectation for most; a spiritual tyranny, an enforced façade. One cannot be positive about harsh realities and still be honest.

In many cases, it is not the soul that leaves the body but the body that leaves the soul. A strong six-foot tall woman, she couldn’t have weighed more than 80 pounds when she died. The cancer had metastasized to many of her organs. She was in constant, systemic pain.

Barbara had a softness, often concealing her deeper qualities. While to many she was “sweet Barbara” to those of us who loved her, this accolade negated her depth, vision and power. It was her courage and wisdom that allowed for our friendship. “I’m so grateful that Andy connected us,” she said to me, one of the last times we spoke, the week she died.

We try to comfort ourselves in platitudes — “it was her time. “ – “She was ready to go.” But the truth is that she held on to life fiercely, and we have lost her. Barbara was love and work and art and passion. And she’s gone.

We meet so few people in our lives with whom we can share our journeys. I admire so profoundly, her integrity, her hope, her ability to love. I wish we had had more time. I will miss her very, very much.

Daily resurrections

…that your passion may live through its own daily resurrection, and like the phoenix rise above its own ashes. ~Khalil Gibran

seedlings
take hold to delicate earth
words carve images on empty sheets of verse
the house holds musty
the smell of baking bread
there are three new
poems in the world today
that weren’t here before

I wish
I had more strength
the sap sucked from my limbs
by birds of prey
I lie here before the next attack
and prepare my quiet insurrection

each
breath I take is manifesto
against the huge machine
we have yet to dismantle

I wait
for when we can plan the uprising
the birds picking at my heart
taste the bitterness of my tenacity
if you looked into my eyes
you would see clarity

the dance bipolar
By Emma Rosenthal
(dedicated to one i love so much i cannot bear it.)
he’s not sick_he’s an artist_don’t call it an illness_call it a transformation_she tells me
if it were any other disease_cancer ms tay-sachs_yes it would call forth a transformation_but it would also be a disease_and we could name it_we could speak of it in polite society_without fear of stigma_there would be fundraisers_and society banquets
he isn’t sick he is an artist_don’t call it an illness_call it a transformation
i contemplate the difference_between matisse and van gogh
hands withered from arthritis_matisse picks up children’s scissors_the only implement his swollen joints could maneuver_and cuts_paper cut magnificent_new blue green splashes of color_cut paper_innovative_majestic splashes of color_paper cuts that sing a zzzjazz symphony_dance tap swing hips paper cuts_swaying in concert halls_accompanying the masters_zzzjazz symphony
van gogh_tortured racked and ravaged with the savage mind_chemicals imbalanced _his mind a soup of bitter thoughts _swirling images_pictures dancing on naked walls_stars spinning out of orbit hurtling to earth_irises a kaleidoscope of color_he is a beethoven symphony_or modern cacophony_turbulent disturbed
his final painting avant guard_pure performance art
he walks into a field after the harvest_golden stalks sway naked in the wind_desolate and lifeless
one shot to the head_splaying blood on the golden canvas_brilliant composition_innovative use of color_contrast to the naked steel gun_the color of midnight_the acrid smell of gunpowder
the french countryside the sounds of birds_the desolate fields after harvest_the grazing goats in the next meadow_the sky vast and promising_the blood the gun the violence _unimaginable one second before _two minutes after_the final scene_brilliantly juxtaposed
early surrealism_pre post modern decadence_performance art
he is an artist_he isn’t sick_don’t call it an illness_call it a transformation